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Monday, August 29, 2011

On the night of June 6th, I painted Christine upon her own linen jacket. I painted without priming. I could make no mistake. I painted her attentive face and piercing eyes. I painted the face of girl, who is also a mother and she had eyes as old as time itself.

I painted her while surrounded by chaos, as deadlines loomed and children ran and played. She appeared like sea of calm within that painting, just as she had within my life.

Christine stepped into my path and cemented my future on May 3rd 2009. I was selling toys on one day out of the three, I worked in as many months. I felt compelled to talk to her, to tell her that Fred had kidney cancer. The air around us was electric. It was meant to be.

We barely knew each other. I was the nice shop-keep. She was the nice customer. We were consequential strangers.

She told me of e-patient Dave.

She told me to get on twitter.

She organized my first Health 2.0 meeting.

She made my 36th Birthday Cake, while Fred lay dying.

She came by hospice and talked with me.

She was there at the first mural.

She blogged one of the first blogs the day after it was placed.

Who would you call in order to talk from the depths of your soul? Who would you pour out your grief to, your fears to? I would answer: Christine.

So I painted Christine telling stories, painting stories. These are stories as old as time, painted in ocher and painted in blood.

“I can tell you something about Stories they drive engagement, “ so says the oracle Christine.

This summer I participated in my first voter registration drive. I stood on the street and attempted to engage with passerby as they hurriedly passed. I spent most of an afternoon trying to reach the location for the registration drive. Then I stood having almost no success. I asked Matthew Metz our team leader if it was always like this. He told me it could be hard to get folks to stop. But Matthew was relentless, and he did talk to a few interested parties.

Soon after, Matthew asked if I could cold-call some potential volunteers. I told him I would try. He gave the packet and script to read for the volunteer ask in the Democratic campaign for Obama 2012 "Are you in?"

I wonder if the person who came up with that campaign slogan actually bothered to cold-call someone, on the phone, using those exact words. “Are-you-in” is a run-on mass of vowels that sound very similar to the name of that girl elf in Lord of the Rings. What was her name, that girl who was sort of despondent and pouty ... Arwen? Yep, that is it. Arwen. Or Areyouin? Where are the consonants?

Consonants are sexy.

Trust me, if you are cold calling someone on a summer Sunday afternoon you want some consonants to help you out. So, after a few unsuccessful calls I chucked the script. I made call after call. I was able to get through three pages of names, and by the end I had four volunteers willing to help. And though some were upset, each of them mentioned how much they wanted to be part of the campaign and spoke of how they saw the big picture in national policy. I had wished I had time to call more potential volunteers, but that was all I could do with two children at home on a Sunday afternoon.

The next day I dropped off the volunteer lists with Matthew. He was excited to see how many volunteers I had found in such a short time. I mentioned I had gone off script and that really helped. I also told him l planned to do voter registration again, but this time I was bringing an easel.

Using Google maps, I researched several different Virginia Metro stations to determine which one was best for some plein air art. I decided on Rosslyn Metro station because it had access to the metro by a public sidewalk with a lot of pedestrian traffic. Next, I decided to do some image research on Google to see what visuals the campaign folks were using to support this slogan. I found nothing, just a blue box printed with the word "In."

So I began to think and I saw within my mind an in-box. I remembered how happy I was to have my meager piles of papers representing volunteers. I thought of all the power those volunteers represented and all the good work they could do. The in-box in my mind's eye was far beyond overflowing with papers, and those papers were volunteer forms. So with my concept firmly in mind, I headed out to Rosslyn.

When I got there, I began to set up my easel and post signs all over it specifying two tings: Artist for Obama and Have you registered to vote? This time I would not frantically follow the crowd, they would come to me.

Within minutes of beginning, a lovely young woman came over. She was working with the folks at the flower stand. Her name was Kryss Flores. She said she would like to be in the picture. I explained why I was painting the picture and asked if she would like to volunteer for the campaign. Not long after speaking with Kryss, Matthew Metz arrived and began talking with other supporters.

Matthew was so excited by how many people we willing to talk while I was painting. It put folks at ease to watch shapes form and colors blend whilst talking about national policy. It was far easier to converse without looking intently into far too earnest eyes. It was much easier to paint and stand side by side of the eyes of the disappointed ones, who had hoped for so much more during this first term of office.

I continued to paint. Above the massive in-box stood a community of volunteers holding a volunteer form aloft. They are preparing to fold it into a paper airplane and send it on its way. And to the right side of the group stands President Obama himself as one of the crowd.

To the extreme right of the painting, a young man stands. His body is twisted and it appears that the paper airplane will fly into his heart. The young man’s arm is flung out and held within his hand is a smart phone. There the image of the paper airplane form repeats. This young man has joined the cause, the movement. He is “IN” and he has a twitpic to prove it.

On the far left side of the canvas stands Kryss Flores with her flowers, and behind her others have joined as well. I painted it this way because that is exactly what happened. Kryss had friend after friend come over and volunteer. She showed everyone the painting and her part in the big picture.

This is my vision of “I’m IN!” I hope the campaign is listening. Because this is all we ask. Paint us in the picture. Give us a seat at the table. We aren’t interested in robo-calls or OFA spam that asks “Can you donate just $15.00 dollars today?” We want communication. We want to be part of the vision.

If you give us that, we will give you our talent, our time and our hearts.

I brought the painting to the Democratic National Headquarters a few weeks ago. Kouri Marshall said they would hang it up inspire the staff. I am so glad that they did that. It makes me very happy to know that they are looking at the flower girl from the Rosslyn Metro station every time they make a call and ask, “Are you in?”

Saturday, August 27, 2011

On Thursday night I had the pleasure of attending Health 2.0 Stat. It is the local Health 2.0 meeting hosted by Mike Tock and Aquilent in the upper room at the Barking Dog in Bethesda. It is always great fun, and I was doubly happy to be there this time because I was speaking again.

I followed several great presentations. And they were filled with excellent explanations of data and technology and mobile applications. Then I got up and began to speak about tagging.

What does tagging mean to you? To my five year old it is a game that is played on the playground. To artists it can be the graffiti on the street. If you tweet, it is a hash tag. Or perhaps you are into tech and then we are talking metadata and QR codes. But it is all about the tag.

Humans have been tagging for a really long time. You can go to the caves of South America, and see tags. You can look inside an ancient pyramid, into the smallest space that no one is ever supposed to see, and there will be tags. Or you can go to the bricks of Babylon and will find them there. The tag that helps all of humanity find you, and tells eternity you lived and breathed.

I started tagging on a wall when I was six. I used chalk and sandstone. Each day my tag washed away and I began anew. Sometimes the writing was a cry for help, a plead for change, or simply the statement:

“I was here.”

I recently spoke in Philadelphia at an ONC event, and as I left the hotel I came upon this door covered with tags. It reminded me of Health 2.0. Have you ever been to the health 2.0 site? It looks very similar. Logos, Sponsors and coming events cover the page. How Health 2.0 has grown over the past few years reminded me of a quote from Shepard Fairey talking about street art: “The more stickers that are out there the more important it seems. The more important it seems the more people want to know what it is. The more they ask they ask each other. It gains real power from perceived power.”

I wondered how can an outsider artist, or an enterprising start-up, or a social media savvy doctor, send a message to us all? Well it is really simple: they can write it on a wall.

There are a couple of definitions of Health 2.0 one is from Matthew Holt aka @boltyboy: “Health 2.0 is just a term that groups together the healthcare use of Web 2.0, which is in itself just a term for easy (& cheap!) To create easy to use software that encompasses search, wikis, blogs, video, online communities, mash-ups…

Another comes from my good friend Dr. Ted Eytan: “Health 2.0 is participatory healthcare. Enabled by information, software, and community that we collect or create, we the patients can be effective partners in our own healthcare, and we the people can participate in reshaping the health system itself.” ~ Ted Eytan, MD @tedeytan

When I see the picture by street artist Banksy of the girl holding balloons, I think of our current care model. You see this little girl in her dress floating so high, with only balloons to support her and you know they are going to pop and she will fall.

But we can create a patient, family community care model combined with the traditional chronic care model and support that by the tools and technologies of Health 2.0, empowered patients and a proactive care team. That is how we get the balloons, the parachute and the net beneath. That is how we save lives and improve quality.

I don’t know if you realize that at the same time Health 2.0 was becoming a movement so was street art. It grew from a world of tagging and spray graffiti to and all encompassing form that welcomed all equally: knit-bombing and wheat paste, murals and stickers. It welcomed a widow who created a painting called 73 cents. That is I on Wooster Collective page back in 2009. “Street art is the first global art movement to be fueled by the Web,” Sara and Marc Schiller of the Wooster Collective. I am part of two movements fueled by the web: Health 2.0 and Street Art.

Imagine what can happen when a health data movement unites with a patient street art movement? We can create a walking wall of change.

And you can be part of that. On September 25th 2011 will be a special day at Health 2.0 in San Francisco. It will be Patients 2.0 and the patient will be front and center. There will be a second gathering of The Walking Gallery throughout the conference from the 25th through the 27th. In addition, I will be working on a large mural piece where street art meets Health 2.0. In that painting the old school will meet the new and the tools of technology will unite all.

Each attendee will be invited to create a personal graffiti tag, because in the end, this story is about …you.

Thursday, August 25, 2011

I hurt my shoulder over the weekend. I lifted my heavy bag of paint and jackets off the airplane one too many times. So, I came back and painted Alex’s jacket with one arm somewhat useless. I was reminded of all of those advocates out there who work constantly in a lot of pain or while managing a chronic condition. I finished up Alex’s Jacket, while rubbing my shoulder and muttering under my breath, “I need a massage.” Well, I could not squeeze a massage into my crazy schedule, but I could paint one.

This is Ann Bartlett’s Jacket: Baring my Soul.

Ann was one of the first people I received a jacket from. She met me way back in May to discuss her jacket. Ann is very fit. She is a runner who also is a massage therapist and she manages chronic diabetes.

On Ann’s Jacket a woman lies face down awaiting the touch of healing hands. She is nude and her long hair is tucked bedside her head. Her arms are placed at tight angles, and her head rests upon unseen hands.

Little tongues of fire rise from her shoulders. These flames are purple and yellow. The purple is for healing and the yellow is for reiki light. It was such a calming meditation to paint this image. The brush flowed upon the muscles with the same grace as a sumi-e brush flows creating bamboo.

Upon the lower back above the right buttock is tattooed the text 120#bgnow. That is a twitter reference to blood glucose now. The 120 is Ann’s target number for best controlling her condition.

In the center between the shoulder blades, a face stares out at the viewer. This is the soul, this is the almost angel inside of us all. This jacket is telling us Ann’s words: “the sum total of the patient is more than the body.”

But, oh, what a body, can you imagine attending a conference dressed in this? Can you imagine showing this much skin even if it is only painted skin? Imagine the shocked stares, the sideways glances, the giggles at the body so displayed.

I wonder how many people will stop to look a little deeper at the soul inside.

Wednesday, August 24, 2011

I worked at Barstons Child’s Play, a toy store in Washington, DC for 12 years. My late husband Fred worked there for a year and a half. We had very different jobs in the store. I helped a lot of customers and Fred priced a lot of products. He was amazingly fast with a pricing gun. I was so proud of Fred, and he rarely made a mistake that beginners often made. He never priced the product on the back. Steven, the store manager, was very clear about his pricing expectations. The price should be crisp and clear and on the front of the package. Customers should never have a doubt about what was the price of a product.

This upfront pricing was so helpful. It helped the customers browse the store free of worry. I can’t tell you how many times I have seen concerned tourists pass by local restaurants in DC when the menu items are listed without prices. The couples walk by those eateries and the old quote often attributed to J.P. Morgan seems to apply, “If you have to ask how much it costs, you can’t afford it.”

I am very glad we worked for many years at a store with clear and transparent pricing. Occasionally, folks would come by with circulars from discount stores showing us deeply discounted prices on certain items that were loss leaders, but we supported a pricing structure that was reasonable and based on margin with excellent and knowledgeable customer service.

I was very disturbed by this lack of transparency when I began to delve into the world of medicine. I also was dismayed by the different pricing structures based on insurance payments or lack of insurance. For many years I was insured at my place of work, but we could not afford a policy for the entire family. So, we paid out of pocket for every pediatric visit and every ER visit. We would pay 100% of the bill for each appointment. Pediatric sick visits would cost $125.00, check-ups with immunization would run close to $400.00 and an ER trip would be well over $1,000. But as we would not know these prices until after we got the bill, each encounter was filled with the nervous worry: “How much will this cost us?”

When our entire family was insured with Fred’s job at American University, I began comparing the old rates we paid compared to the new ones with insurance. Insurance paid at only 80% and the rest was written off. As an uninsured family we had always paid 100% of the bill. How is that possible?

I was further dismayed, in the spring of 2010 after hearing a presentation by a FICO group about fraud management. They explained what a great service they were to insurance companies as they would track a hospital or physician practice for fraudulent coding that resulted in higher reimbursement then required. This tracking could help insurers recoup funds or at least stop fraud. I questioned the speakers, “Who is watching out for fraud against the uninsured or underinsured patient who is often paying at 100%.” They looked at me quizzically first saying, “No one. Or if anyone was checking I would I guess it would be the DEA?”

I wondered who is out there representing consumers? Who is demanding pricing transparency in Medicine? Which practitioners are giving great service at good prices? How do I even find out what prices are reasonable? Then I met Alex Fair.

This is Fair Care: Alex Fair’s Jacket.

I met Alex at Health 2.0 Goes to Washington in 2010. He walked purposely through the room. Alex bristled with anger at a system so stacked against consumers so he designed http://www.FairCareMD.com. It is an online resource that helps patients compare service options; they can negotiate and see which providers want to be part of a process of true transparency and access. Alex created this vital service after trying to get pediatric wellness checks for his children, and finding out he was charged five times the price that he had been charged while insured.

Alex’s jacket depicts much of the anguish the uninsured, under-insured and those with a high-deductable plan feel while trying to get services. I am sure you have heard of the phrase drowning in debt, but it most applies to those who have lost everything in an attempt to get medical care. When I testified in March of 2010 about the great need for reform in our medical system, I met a very sick people who had sold all they had in an attempt to pay for medical care. One of the saddest examples was a family in which both parents were sick and so was one of their children. The father spoke to us from his wheel chair as he described selling their home and most of their possessions in an attempt first to pay for care and then to qualify for Medicaid. The family was uprooted and had to move into a basement of a relative just to survive.

So within this painting a hand reaches out of the depths and clutched within his fingers are a few bills. These bills are burning. I have seen many pictures of money “burning” or “going down the drain.” But those bills are usually $10’s, $20’s and $100 dollar bills. This hand clasps a few ones and a five. This is all he has and it is being destroyed. When you live on the edge every dollar is so important. Many times in my adult life money was so tight, that the only money left for groceries was contained within the spare change box on my kitchen counter. I would sit at the table creating rolls of coins to pay for milk and bread, as Fred’s shoulders would slump in defeat at our economic status.

This is the reality of many of us in this nation. Every dollar is important and 73 cents can be the straw that broke the camel’s back.

Upon this hand, a couple of figures climb. Half in and out of the water a women tries to gain purchase. Her hospital gown is falling off and her face is distraught. Her husband grasps her arm. He is naked, having literally “lost the shirt off his back” in the pursuit of her care.

A doctor grasps the husband’s arm as he mounts the pinnacle of the hand place a battle pennant of FairCare. Holding the flagstaff is a small girl. She is our hope for the future. Her face is lit with a small smile of joy. She represents a future in which price structure is transparent, services are accessible, doctors are not hampered by excessive office paperwork and we all benefit by being healthier and unafraid to schedule appointments.

Wednesday, August 17, 2011

Years ago, I was preparing for my first rummage sale to help the homeless shelter at St. Paul's Lutheran Church. As the piles of donated goods slowly filled the portico off sanctuary, a space that was usually empty, still and sacred became filled the bric-a-brac of many times and nations. These were the "extra things," the things easily given away to help those who had lost all they had. As I sorted and priced item after item, A lovely woman with an assured stance, strode into the room with a box. "I no longer need these," she said. I gave her a tax receipt and laid the box aside. Later that evening, I began to sort through the box. It was mostly books. In the box was a newlywed's guide to cooking for two, a book on how to please your man and an adult board game bought from Spencer's Gifts.

I chuckled at the game and priced it at a dollar.

Then I pulled out more books: a hardback book about how to know if he is cheating, a guide to navigate divorce, a dog-eared paperback on grief. The chuckle died upon my lips. Finally, I lifted out a book about positive thinking and a hardback about being a single empowered woman. I smiled at the final titles, and looked down all that was given.

This was a life in a box.

Life is filled with transitions such as the ones represented by this donation. Some times such transitions span years and decades. Sometimes they span only weeks. In hospital settings such transitions often end the same way, with a life in a box.

My husband Fred Holliday II was hospitalized for 11 weeks in five facilities. He had 46 ambulance transports during that time. He went through many transitions of care. And I did a painting focusing on one of them and it was called 73 cents.

In mid May of 2009, Fred was in a rehab facility in Maryland. We were placed there so Fred could learn to walk again after being bed-ridden for 6 weeks. Fred had metastasis of the lower spine and pelvis. He had also suffered a metastatic break to his left hip that pinned via surgery. He was under going a second series of radiation and had just begun chemotherapy. He had been taken off his Dilaudin infusion pump and oral steroids and had been placed on percoset.

He was in excruciating pain.

As a span of days past, Fred grew weaker and weaker. He tried so hard to walk in rehab, but it was almost impossible. The rehab had been designed for post surgery and accident victims. It was a place where pain was good. It was a place where you were supposed to eat in the cafeteria, and if you stayed in your room you were fed last. Fred could barely sit up let alone stand. But he tried so hard.

On Saturday May 16, 2009, I was with Fred in his room. I had brought my painting supplies with me and painted beside him on the rice sheets that would make the painting "The Medical Facts Mural." I looked much like the day Fred first met me 17 years before. I knelt on the floor painting, my hair pulled back with paint brush in hand. I was even using the same brushes.

I looked up at Fred to share this memory, but he was sleeping. He had been sleeping most of the day, I began to worry that he might need a blood transfusion. I pulled out his medical record and counted the days between transfusions. He had had a transfusion about every 14 days. Today was day 15 or 16.

I brought the medical record with me to the nurses station and asked for a stat CBC. She looked at me and said the tech had already left the facility for the day and would not be back till tomorrow morning. I showed her Fred's record and again expressed my concerns. She said she would ask a tech to come over from the hospital. The hospital was less than 50 yards away on the other side of the parking lot. The tech arrived within two hours, blood was drawn and the lab results did show that Fred was in need of a transfusion.

"Okay, when do we begin the transfusion?" I asked. "Oh, we don't do that here," the nurse responded. "You will have to get him transfered to a hospital, and that won't happen till Monday because we are understaffed." Did I mention the hospital is less than 50 yards away?

By this point we had done over 40 ambulance transports, and many of these transports were done by an amazing company called Team Critical Care. I carried their phone number with me everywhere I went. I called them up and asked what paperwork was needed for a hospital transfer with ambulance transport. They told me what was needed, and I went back to the on duty nurse. I asked nicely for the needed papers for the ambulance team. She printed them out and then I asked for my own copy. She said "We don't do that." I told her I understood that she was not supposed to give me my own copy, But couldn't she do it secretly in our room? After all, I was very aware of the dangers of lost paperwork during transfer.

She gave me my own packet.

The ambulance arrived and we were driven across the parking lot. We were admitted through the ER and waited six hour to get a bed. When we got up to the floor I asked to see his inpatient Medical Administration Record. I compared it with my own copy. The hospital had an error on the dosage amount on a drug Fred was taking. I pointed it out to the doctor. She then corrected the record.

I stayed with Fred through the night as he was transfused. The next morning was Sunday. I asked about transport back to rehab. The staff person at the nurses station told me "Good luck, we have 70 patients to discharge and one discharge nurse on duty." So I called Team Critical Care once again, and once again they talked me through the process of gathering all the necessary papers.

Thank God for Team Critical Care.

We transfered back to rehab. Usually, after transfusion Fred was happy and rosy cheeked, but not this time. He was tired and he still seemed pallid. As I sat with him that morning I wondered what would happen next.

Not long after the Doctor who had overseen Fred's transfusion in the hospital came over to the rehab. She was concerned. She said Fred didn't really belong in rehab, he belonged in hospice.

I looked over at Fred with tears in my eyes. It was time for another transition.

The Walking Gallery Mini Doc

About Me

Regina Holliday is a resident of Grantsville, Maryland. She serves on the board of the local non-profit The Highland Thrift Shop. She is a member of the Grantsville Rotary Club. She is also Asst. Cubmaster of Pack 460 Cub Scouts.

In addition, Regina serves as a parent advisor to the Garrett County School Board Health Advisory Committee. She is also a member of the Garrett County Chamber of Commerce and The Garrett County Arts Council.

Ms. Holliday is an activist, artist, speaker and author. You might see her at a health conference painting the content she hears from the patient view. She is part the movement known as participatory medicine. She and others in this movement believe that the patient is a partner with their provider and both should work together as a team.

Regina is a mother and a widow; she speaks about the benefits of health information technology and timely data access for patients due to her family loss. In 2009, she painted a series of murals depicting the need for clarity and transparency in medical records. This advocacy mission was inspired by her late husband Frederick Allen Holliday II and his struggle to get appropriate care during 11 weeks of continuous hospitalization at 5 facilities. Her paintings became part of the national debate on health care reform and helped guide public policy.

She also began an advocacy movement called “The Walking Gallery.” The Gallery consists of medical providers and advocates who wear patient story paintings on the backs of business suits. Paint and patients, pills and policy all come together within The Walking Gallery of Healthcare. This "walking wall" of 330+ individuals who wear personal patient narrative paintings on their backs is changing minds and opening hearts. They are attending medical conferences where often there isn’t a patient speaker on the dais or in the audience. They are providing a patient voice, and by doing so, are changing the conversation.

She published a book with the Health Informatics Society of Australia (HISA) entitled: "The Walking Wall: 73 Cents to the Walking Gallery."